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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Humira levels & antibody testing - UK


10-15-2015, 08:41 AM   #1
Kat123
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Humira levels & antibody testing - UK

Does anyone know, is it possible to test for Humira trough levels and antibodies in the UK?

I don't feel that Humira is working for me, and seems it would be sensible to test for levels before doing anything - e.g. coming off it / switching to another biologic / upping dose.

My GI has told me previously that they don't test for its levels in blood and how they would tell if it is working is from clinical signs - in my case fistula healing.

Thanks
10-15-2015, 10:22 AM   #2
Kat123
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I think I may have answered my own question - that it's not generally available, but there is a NICE consultation going on at the moment: https://www.nice.org.uk/guidance/GID...tion-document2

There is also a brilliantly-named research study looking into it: PANTS – Personalised Anti-TNF Therapy in Crohn’s Disease study (results are not expected until the end of 2016)

Still interested to know if anyone in the UK has had it done - obviously some hosptials are doing it as part of the research.

Thanks in advance
10-16-2015, 06:10 AM   #3
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Hi, thanks for posting this, interesting reading. I hadn't heard of this and it hasn't been mentioned by my GI. Humira took about 4 months to work for me and I've been on it for over two yrs and according to faecal calprotectin am in remission. The PANTS study was mentioned as in uk their thoughts on Humira and anti bodies have changed. They need this study to reinforce their beliefs. Maybe you could ask your consultant if you could have this test. I'm interested as I'm probably coming off Humira as it still works for me, we think, and we think I haven't built up any anti bodies to it yet, but could at any time. So the idea is to save the Humira for when it is nessasary. If I relapse I can go back on and it should work. They think the longer you are on it the more lightly you are to build up antibodies. Sorry I haven't really helped, I hope it starts working for you.
10-16-2015, 09:03 AM   #4
Kat123
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Thanks. Yes, I will ask my consultant, but it seems it would only be available at the hospitals participating in the study. No harm asking though.

Glad it worked for you. Yes, it sounds like this test could have lots of uses.
10-16-2015, 09:29 AM   #5
Clash
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Concomitant use of biologics has been proven in studies to not have much efficacy. It is common to develop antibodies once you come off the biologic. Co committant use was the original standard but was swapped for consistent use when several studies showed that the production of antibodies after discontinuance of the med made is ineffective.

I think my little penguin may have some studies regarding this. Tagging her should bring her by.

In reference to OP post, in the US, we do use trough level and antibodies testing to check efficacy of biologics. But there are a number of patients that are monitored for efficacy using clinical testing for remission. Either way I hope the Humira is working for you!
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Clash
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C age 19
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CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
10-16-2015, 10:18 AM   #6
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I've just been told by my consultant the most recent studies prove you can actually develop the anntibodies while still on Humira, but not when you come off it. This information will change the way Humira is used, in the uk.
10-16-2015, 10:53 AM   #7
Kat123
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Thanks. Yes, that is how it's efficacy is being monitored for me: through MRI imaging of perinanal disease. But it doesn't seem to have helped much, which was why I was wondering if blood Humira/antibody levels might help pinpoint why and inform treatment options.

From what I can find out, testing is not generally available here.
10-16-2015, 12:31 PM   #8
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Hi Kat123,

I had both these blood tests this year. The antibodies and the humira levels. My hospital is in Brighton but they sent the blood samples to St Thomas's in London.

I had found out about them myself and where to get them. I rang the lab at St Thomas's to ask all about them and said if my consultant wouldn't test them, could I pay for them privately. He said I could but he couldn't see why my gastro wouldn't and obviously when I asked he did!!

Hope this helps.
10-16-2015, 03:33 PM   #9
Kat123
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Thank you B Baker - that's really helpful! Just what I need to know! I can't see that the tests would be that expensive - certainly not compared to the Humira itself. The NICE consultation doc seemed to be saying that it wasn't very clear how the test results should be interpreted and acted upon, hence the need for more research. Was your gastro able to interpret them ok and adjust your treatment accordingly (if it needed adjusting)?
10-16-2015, 04:40 PM   #10
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Exactly, what's the point keep injecting something v expensive when you could have built antibodies to it, so you don't have any in your system, total waste of time. I think they worry you may need an increase and that costs them more money!!

They found me to have no Humira in my system and slightly raised antibodies. I was taking it every 2 weeks. At my hospital there's an 'ibd team' which includes a pharmacist and she is dealing with me. She said her and my gastro discussed my case and with these results and my disease being active, I should up the humira dose to weekly and consider adding azathioprine to stop the antibodies from getting higher. They said consider, because in the past aza gave me bone marrow toxicity and so they mentioned adding another drug usually used for treating gout to counteract that side effect!! And like you say, she said no one really knows how accurate or reliable these tests are. I certainly feel like a guinea pig!! But for me Humira had been good to me for a long time before it starting losing its effectiveness, so I was happy to increase but still pondering on whether or not to add the others.

I've been on the new dose for over 2 months and things have definitely improved, so that's good enough 'evidence' for me! I had to repeat the Humira blood tests a couple of weeks ago and am seeing the pharmacist again in a couple of weeks to see if the Humira levels have improved.
10-17-2015, 10:09 AM   #11
Kat123
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Thanks B Baker,

hopefully my gastro will agree to test and be able to sort it out, but if I need to I may come back to you for the contact details for lab at St Thomas' if that's ok.

I've been on Azathioprine from the start so I shouldn't have developed antibodies, but who knows. It's for a fistula not active luminal disease, so maybe it's just not effective on that for me...

I can see why you would think twice about going on Azathioprine again. Presumably you had your TPMT activity tested?

I do hope it continues to work for you. All the best
10-19-2015, 08:34 AM   #12
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I did, thank you. Course it's ok, I'm on here quite regularly but hope your gastro does them.

I would hope either way, they try you on weekly, I've heard good things about Humira helping heal fistulas. It would be such a waste if they didn't. We only have a small amount of drugs to try. They should let you give Humira a fair trial.

Please let me know how things go. Good luck.
10-19-2015, 02:42 PM   #13
Chester31
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My son is on weekly Humira and Methotrexate. He is due to transition to the adult hospital within the year and we recently met with an adult GI for the first time. He suggested getting Humira levels and antibody testing done. We are in Manchester but not sure where the testing is actually being done. We are still waiting for results - almost 2 weeks now. Definitely worth asking!
10-19-2015, 03:39 PM   #14
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I think I may have answered my own question - that it's not generally available, but there is a NICE consultation going on at the moment: https://www.nice.org.uk/guidance/GID...tion-document2

There is also a brilliantly-named research study looking into it: PANTS – Personalised Anti-TNF Therapy in Crohn’s Disease study (results are not expected until the end of 2016)

Still interested to know if anyone in the UK has had it done - obviously some hosptials are doing it as part of the research.

Thanks in advance
I accepted an invitation from my hospital (St Marks) to take part in the PANTS research only this past week. Haven't had a meeting regarding this as of yet.

I will be getting my loading doses tomorrow and will be discussing another research study I have also been invited to take part in. I may also get the chance to meet someone regarding PANTS and will keep the thread updated when I know more.
10-19-2015, 03:45 PM   #15
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SumCIA, really interesting, can I please ask what the other study is? Thanks.
10-19-2015, 04:12 PM   #16
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SumCIA, really interesting, can I please ask what the other study is? Thanks.
Of course. I will know alot more details tomorrow. I only got the gist of the research whilst speaking to one of the clinical researchers over the phone a couple of weeks ago.

I believe the main part of the research concerns Vitamin D and its role in crohns disease and the immune system. I know Vitamin D and crohns has been looked at before so I am interested to see if there is a new angle to this study.
10-20-2015, 05:28 AM   #17
Kat123
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Thank you all very much for your input. I will let you know how it goes with my gastro appt tomorrow.

Good luck with starting your Humira SumCIA
10-21-2015, 07:48 AM   #18
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After all that my gastro suggested the humira levels and antibody testing himself! Got blood taken today which is day 15 (lucky I decided to take Humira tonight rather than this morning!) and going to escalate dose to weekly. He said the result would take 2-3 weeks. I did ask shouldn't it be done at day 10, but he thought it would be ok, since antibodies will show in any case if there are any.
10-22-2015, 07:28 AM   #19
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How funny!! I had the blood tests taken at the same time as you (was due my fortnightly Humira that evening) and now I take it weekly they asked me to do the same (have the blood tests taken the day I take Humira but obviously before I inject!!).

Really hope increasing the dose helps.
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